My Breast Cancer Story
When I was 12, my mom was diagnosed with stage II triple negative breast cancer.
This is the true beginning of my breast cancer story.
She was only 38 at the time. I was 12, my brother was 3, and my sister was 6 months old - not even done breast feeding.
Her doctors said to "save" her they were going to "damn near kill her". In 1989 this looked like:
a lumpectomy and full lymph node removal
10 rounds of chemo (a "red devil" cocktail called AC5FU)
7 weeks of overlapping radiation
Hi, I'm Amy. Oncology Massage & Lymphatic Drainage Therapist, Online Educator, Breast Cancer Survivor.
And this is my mom, Sue, a 35 year survivor (of breast cancer and more). She's amazing.
Thankfully it worked. ❤️
35 years later still she tells a story of being sick in bed, too sick to get up.
She remembers me standing in the bedroom doorway, holding my baby sister on my hip and little brother by the hand, asking if she was going to be okay.
I don't remember this moment myself but I know none of us knew the answer.
She has since told me that she always expected to get breast cancer one day.
After all her mother was a survivor and her grandmother and great-grandmother both died of metastatic disease.
What she didn't expect was for cancer to come calling for her at such a young age (they were all in their 60's and 70's).
And THIS is where MY breast cancer story takes a different path from most women who receive this diagnosis.
High School Days.
I grew up with the expectation of breast cancer from a young age.
Most women diagnosed with breast cancer - up to 85% - have no familial history or known predisposition to the disease.
I had my first mammogram at 23.
I remember calling to make the appointment and the skeptical tone of the woman on the other end of the line as she asked: "HOW old are you?"
Back then gene mutations, gene testing, and prophylactic mastectomies weren't yet "a thing".
The BRCA 1 and 2 mutations - the first and most widely known - didn't even get discovered until 1994 and 1995. 🎓
When testing did start my doctors advised against it because of lack of evidence and information.
A faulty gene could mean a pre-existing condition and loss of insurance.
Besides, they asked, what was I going to do about it if I did have it?
I had no Angela Jolie role model to follow.
And so I began a lifetime of close monitoring:
annual mammograms starting at 30
the occasional pelvic and ovarian ultrasound (my grandmother was later diagnosed and died of ovarian cancer)
alternating mammograms and MRI's every 6 months at 38 (same age as my mom's diagnosis)
CA125 blood work and transvaginal ultrasounds every 6 months as I neared 40
But even before this I lived with the fear of what was to come.
I remember standing in my dorm parking lot when I was 19 and crying as I looked at the man I then loved.
In that moment I voiced my greatest fear: someday I will marry and have children and I will get cancer and leave them.
I wasn't a fortune teller but I didn't need a crystal ball to picture this as my future. 🔮
As the years went on I learned to cope with my fears and how to live my life with the ever-present possibility of cancer.
Though if I'm honest I'm sure it shaped some of my life choices.
And one of those life choices became my path to making sense of a lifetime under the shadow of cancer.
Supporting the Avon Walk for Breast Cancer with my massage therapy colleagues in 2012.
I ended up making cancer my career.
I didn't intend to work with with cancer patients.
I went to massage school in my mid-30's so that I could leave the corporate world and find work that felt meaningful.
But the universe has a way of delivering what we need, even when we don't know we need it.
My final term in school I learned about a specialty called "oncology massage".
I learned that there was a way to help people going through a cancer experience - to make things better, even for moments at a time.
I thought of my mom and her story of being too sick to care for her kids because of treatment.
What if oncology massage had been available to her? Could it have helped?
And I thought about myself.
What if it's me someday? Will there be someone to do this for me?
Everything clicked for me that day in 2012. 🎉
What began as a desire to help people through connection and touch turned into the studies of:
oncology massage
end of life and hospital- based massage therapy
post-mastectomy and post-radiation scar tissue release
manual lymphatic drainage therapy and lymphatic system support
Through this work I found comfort in helping others face their cancer experience instead of worrying about my own.
But my story doesn't end there. It's where it all comes together.
My husband and I in Aruba, Thanksgiving 2017, three weeks after my last chemo treatment.
My worst fears were ultimately realized and (thankfully) overcome.
In 2017, one year after finally confirming my BRCA1 genetic mutation, I received a diagnosis of stage 1 ER+ Invasive Ductile Carcinoma (IDC).
After a lifetime of waiting and wondering it finally happened.
In some ways I was lucky. Because of such close monitoring we found the cancer early and I was able to take aggressive action.
I chose a double mastectomy with direct to implant reconstruction and a bilateral salpingo-oopherectomy (removing my ovaries and fallopian tubes).
I also underwent 8 rounds of chemo (ACT) and three years of targeted infusions to reduce my chances of recurrence.
I was 41 at the time and I am currently in year 5 of 10 years of hormone therapy. ❤️🩹
Since then I have realized that I have a tool box of tools and resources that continue to help me through life in survivorship:
the stories and experiences of family
the stories and experiences of my clients and friends
most importantly, my professional education, training, and hands-on experience
While I cannot say I am grateful for a lifetime lived in cancerland, I can say that I have learned to make the most of a difficult situation.
I have built a successful career that, 11 years in, is now dedicated to serving the breast cancer community.
What started as using my hands to care for others evolved into using my hands to care for myself, and, ultimately, teaching others to do the same.
The biggest lesson I have learned along the way is that we cannot control the things that happen to us but we can choose how we respond.
My hope for you is that no matter what you're going through, or have been through (breast cancer included), that you find a way to grow within and around your challenges.
I hope that you learn that you have more within your control then you realize.
And if you haven't learned that yet, then I am here to help you get there.
Because it's my unusual story that brings us here.
A decade+ of living at the intersection of personal and professional experience in breast cancer land has uniquely equipped me to support you with the physical, mental, and emotional challenges of a breast cancer experience.
Paragliding in Switzerland, June 2023. Living a life bigger and better than I ever imagined,
through breast cancer and beyond.
Where we go from here.
I share this story with you because I am here in your inbox with a greater purpose than I have declared directly to this point.
I love connecting with you.
I love offering resources and recommendations.
I love inspiring you with my stories and those of others.
But in the end I am here to teach you.
I am here to teach you:
to connect with your body on this side of diagnosis and for years to come
to care for your body with practical and relevant strategies
to love yourself as you are now
I hope you will take my hand and walk with me as your guide, through breast cancer and beyond…
Click the button to send me an email and TELL ME YOUR STORY.
I really want to know.
Until then, see you next Sunday.
Whenever you’re ready there are 3 ways I can help you take healing into your own hands:
"Dry Brushing for Breast Cancer" Online Workshop: Spend one hour to learn activities and practices that can change how you care for your body after a breast cancer diagnosis with just 10 minutes a day.
“Ask Amy” Online Expert Consultation: A 1:1 video call focused on your needs where you can share, ask, and get what you need NOW, from from the intersection of personal and professional experience in breast cancer land.
In-Person Massage/Lymphatic Drainage: Let my hands do the work for you. Oncology Massage & Manual Lymphatic Drainage Therapies offer relief from breast cancer related concerns and create time for you to relax. (Buffalo, NY)
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